Bittersweet
Symphony
With gratitude and hope, acclaimed singer-songwriter and
MS sufferer Victoria Williams faces the music.
To see this article in its original form in Neurology Today magazine, please click here.
BY Susannah Gora
Lou Reed once said, “Listening to her
sing is a demonstration of majestic
power.” Lucinda Williams has called
her a genius. The Los Angeles Times
described her as a “musicians’ cult
figure.” You may never have heard of
singer-songwriter Victoria Williams,
but chances are you’ve heard the
echoes of her rich artistic influence across a wide spectrum
of musical genres, since many of today’s most legendary
musicians cite her as an inspiration. Neil Young
was so impressed with Williams’ unique style (which
Rolling Stone described as “Cajun-seasoned country
rock”) that he asked her to open for him on a nationwide
tour in 1992—even though he hadn’t met her.
The invitation was a dream come true for Williams, who’d
long admired Neil Young’s work. But one night on tour, the
dream became something of a nightmare. “I was up onstage,”
remembers Williams, “and my hand wouldn’t play.” Ever the
professional, Williams finished her performance by singing a
capella. Soon afterwards, she went to a doctor to ask about
the strange incident with her hand. She’d also had occasional
difficulty walking, tingling in her extremities, and feelings of
electric shock when she moved her head a certain way.
Williams was eventually diagnosed with multiple sclerosis
(MS), an autoimmune disease that causes “a recurrent
inflammation of the central nervous system, which
includes the brain and spinal cord,” according to Allen
Bowling, M.D., Ph.D. (neurologycare.net), medical director
of the Multiple Sclerosis Service and director of the
Complementary and Alternative Medicine Service at the
Colorado Neurological Institute, and clinical associate
professor of neurology at the University of Colorado-Denver
and Health Sciences Center. Dr. Bowling estimates
that there are between 350,000 and 400,000 people in
the United States suffering from MS, which affects twice as
many women as it does men. As he explains in his book
Complementary and Alternative Medicine and Multiple Sclerosis
(2nd edition, Demos, 2007), symptoms of MS can include
“visual blurring and weakness, fatigue, depression,
urinary difficulties, walking unsteadiness, stiffness in the
arms or legs, tingling, and numbness.”
The MS diagnosis was particularly devastating news
for Williams because, like so many musicians, she didn’t
have health insurance. “I had to go to a lot of different hospitals,”
remembers Williams, who is now 51, “and I had
to get lots of tests. I had a huge hospital bill.” To help Williams
in her time of need, a group of her musician friends
got together and recorded Sweet Relief, the critically revered
1993 benefit album on which artists including Pearl Jam,
Lou Reed, Lucinda Williams, and Soul Asylum recorded
covers of Williams’ songs. The album, named after a tune
by Williams, was a great commercial success, and it did
provide some much-needed relief by paying for her medical
bills. She was deeply touched by the effort and felt
inspired to give back. “I said, ‘I want to start a benefit to
help other musicians who get sick,’” Williams recalls. The
result was the Sweet Relief Musicians Fund, which aims
to assist professional musicians in financial need suffering
from health problems.
Musical Youth
Music has been an essential part of Williams’ life for as long as
she can remember. “I just think music was in me,” she says.
“I was always singing.” Growing up in Shreveport, Louisiana,
she sang in her church’s choir, and started writing songs at
a young age. She loved all kinds of music—gospel, country,
blues, and folk in particular. Even then, her songwriting drew
heavily on stories of the South and its inhabitants; it’s an area
she believes makes for fertile musical ground. “I think it’s the
tempo of life down there,” Williams suggests, “and there are a
lot of interesting characters about—a lot of
eccentrics in the South.”
Williams moved to California in the
1980s, where she frequently performed in
Venice Beach, and was discovered by the
friend of an influential songwriter named
Van Dyke Parks. He became a mentor to her
and connected Williams to other musicians.
Still, the early days of her career were relatively
challenging. In the days before 1997’s
women-centered music festival Lilith Fair,
Williams says, there weren’t as many opportunities
for women in alternative music
as there are today. “Since Lilith, there have
been so many more women artists getting
worldwide attention, which is just wonderful,”
she says. “But when I was starting
out it was rough. I remember I had a
development deal with [music label] EMI,
and I made a tape and turned it in. They
said, ‘Well we already have [unconventional
singer-songwriter] Kate Bush, and that’s enough.’ I was
nothing like Kate Bush! But that’s how it was back then.”
Williams’ first record, Happy Come Home, was released in 1987
and was followed by Swing The Statue in 1990. In 1993, the Sweet
Relief album brought her a great deal of attention. That same year
Williams tried out her acting chops, appearing in the screen adaptation
of Tom Robbins’ book Even Cowgirls Get The Blues, directed
by Gus Van Sant and starring Uma Thurman and Keanu Reeves.
Williams was a fan of the book, having first read it in high school.
In 1994, Williams released the introspective album Loose,
followed by 1998’s Musings of a Creek Dipper, 2000’s Water To
Drink, and 2002’s Sings Some Ol’ Songs, on which she brings her
unique flavor to standards like “Someone to Watch Over Me”
and “My Funny Valentine.” All of her albums have been acclaimed
by critics, and along the way, Williams has toured with
many celebrated musicians, including Randy Newman.
The Search for Treatment
Her MS is of the relapsing and remitting variety. “It comes and
goes,” she says. “But my feet are always numb, and my hands are
often numb.” When she’s playing the guitar, says Williams, “I always
look and see if my fingers are playing the chords right. I’ll
think, ‘Am I playing the chords? Because I can’t feel that I am.’ And
sometimes I feel like my hands are so weak that I couldn’t be playing
the chords.” Dr. Bowling says that these kind of symptoms can
be common with MS, and explains how something as physically
demanding as going on tour could have a detrimental effect on
them: “There definitely is a sub-group of
people with MS for whom high levels of
stress, fatigue, and lack of sleep bring out
chronic symptoms. Some people with
MS are prone to gait instability [imbalance
while walking], fatigue, or tingling that
comes and goes daily, and high levels of
stress or fatigue worsen the severity of the
chronic symptoms.”
Williams is extremely fond of her neurologist,
Jeffrey Bronstein, M.D., a professor
of neurology at the David Geffen
School of Medicine at UCLA. (“I love him,”
she says enthusiastically.) Dr. Bronstein put
Williams on the MS drug glatiramer acetate
(Copaxone) in the early 1990s, to great
success. “She went from three or four exacerbations
a year to zero—maybe a small
one every three or four years,” Dr. Bronstein
says. “She’s been able to maintain a high level
of function, I think, because of it.”
“The only problem,” Williams says softly, “is that it cost a lot,”
like all MS drugs. As a result, she has at times tried to alleviate her
symptoms using alternative treatments instead. She once even
owned a beehive. “I would get the bees and sting myself,” Williams
says. Some people believe that apitherapy, or bee venom therapy,
can help MS sufferers. Williams is also a proponent of acupuncture.
“If you have a good acupuncturist who knows what they’re
doing, it really does help,” she says. At one point, the singer had
been confined to a wheelchair but was able to walk again after she
received electrical stimulation of her muscles. “I kind of looked like
Frankenstein!” Williams laughs. “But it really helped me walk.”
However, there is little or no evidence to support the medical
benefits of many of these alternative treatments, some of which
might even be harmful. “Non-traditional [treatments] that are
not regulated can be dangerous,” explains Dr. Bronstein. “My
stance with [Williams] has been that these alternative therapies
have not been proven to be effective or safe, and so I don’t recommend
them. The ones that seem safe I have no problems
with her doing, as long as they are not instead of things that we
know work,” such as glatiramer acetate.
Currently, Williams isn’t taking any medication for MS. “I can
tell a difference now that I am not taking it—I’m feeling a little
loopy,” she admits. And there are some real risks that arise from
not taking MS medication. “Being on these drugs reduces her
chances of being permanently disabled and in a wheelchair,” Dr.
Bronstein explains, “so she’s at a higher risk of being more disabled.
We are trying hard to get her back on therapy.” Sweet Relief,
the organization that Williams helped create to aid musicians
in need, is not able to help her at this moment. “They are fundraising
right now,” Williams explains. “Maybe they’ll have enough
money after a while.” Dr. Bronstein believes Williams’ situation
is “a great plug for having a national health program: We have a
clear therapy that definitely improves long-term outcomes; we
have somebody who wants to keep working, but because of the
way our insurance works, she is unable to afford the therapy.”
Dr. Bowling offers some advice for Williams and others in a
similar situation: “There are some complementary therapies that
are worth considering for MS, ideally in conjunction with standard
treatments. They include dietary strategies, where you cut back
saturated fat, increase polyunsaturated fat, and consider vitamin
D-based approaches. Also, exercise may help with multiple symptoms
of MS, and not smoking.” Dr. Bowling also recommends “relaxation
methods, basic meditation practices—those are free and
may be quite helpful if someone has got high levels of stress, and
could also be helpful for depression, pain, and insomnia.”
Williams recalled a recent tour in which the more music she
performed, the better she felt physically. “Music is such a healing
thing,” she says. She may be on to something: Dr. Bowling
says music is “one of the more promising approaches to MS.
Moving to music, creating it, singing it, just listening to it— activates
all of these different brain regions.”
Shelter in the Desert
Williams has been busy in the recording studio, working with
Scottish music producer Isobel Campbell (formerly of Belle
and Sebastian) and also with the Arizona-based rock band
Calexico. She says she has written songs about MS but hasn’t
released any—yet.
Williams’ music is available through her website, victoriawilliams.
net (be sure to check out her whimsical paintings there) and
on iTunes. She is also tremendously excited about her upcoming
tour throughout Australia and New Zealand with musician Vic
Chesnutt. “He’s great,” says Williams of Chesnutt, who is paraplegic.
(Williams, a true believer in musicians helping each other, was
one of the main proponents of the tribute album Sweet Relief II to
benefit Chesnutt in 1996. It featured the likes of Madonna, R.E.M.,
Hootie and The Blowfish, and Williams herself, performing Chesnutt
covers.) She is hopeful that her MS won’t hinder her abilities
on tour too greatly: “God willing, I will be ok.”
She doesn’t use the expression “God willing” casually—Williams’
belief in the divine has been a guiding force in her life and
her art. “It is a gift when songs come,” she reveals. “It’s a spiritual
thing.” Williams tends to look on the bright side, often crafting
songs that reflect her upbeat, grateful attitude towards life—even
in the face of MS. “I just feel so blessed,” she says, earnestly. “God
has been so good to me.” Says Bronstein of Williams, “She’s got a
wonderful, positive approach to life. She doesn’t focus on what she
can’t do, but on what she can.” Williams even sees a bright side to
having MS: “I think it has increased my capacity for feeling empathy
with people who are having a rough time.”
Williams lives in the tranquil desert of Joshua Tree, CA. It is a
place of exquisite natural beauty, where the smallest things can
inspire moments of reflection as well as great music. Williams
recently wrote a song about a bird who is “always building its
nest in the wrong place,” only to have the wind tear it down.
“It was about a real bird,” Williams explains, tenderly. In some
ways, the song could have been about Williams herself: Life
throws her challenges, but she perseveres. “I’d see her,” says
Williams of the little bird, “and the wind would keep blowing
the nest down. And she’d keep on building it.”